What’s It Like to Get a Stem Cell Transplant?

When the decision is made to have a stem cell or bone marrow transplant, there are several steps in the process. The steps are much the same, no matter what type of transplant you’re going to have.

Evaluation and preparation for a transplant

You will first be evaluated to find out if you are eligible for a transplant. A transplant is very hard on your body. For many people, transplants can mean a cure, but for some people, problems can lead to severe complications or even death. You’ll want to weigh the benefits and risks  before you start.

Transplants can also be hard emotionally. They often require being in the hospital, being isolated, and there’s a high risk of side effects. Many of the effects are short-term, but some problems can go on for years. This can mean changes in the way you live your life. For some people it’s just for a while, but for others, the changes may be lifelong. Some of the side effects are really unpleasant and can be serious. Your cancer care team will do everything they can to make you comfortable, but some of the side effects may not be completely controlled or relieved.

Before you have a transplant, you need to discuss the transplant process and all its effects with your doctors. It also helps to talk with others who have already had transplants.

It’s also very hard going through weeks and months of not knowing how your transplant will turn out. This takes a lot of time and emotional energy from the patient, caregivers, and loved ones. It’s very important to have the support of those close to you. For example, you’ll need a responsible adult who will be with you to give you medicines, help watch for problems, and stay in touch with your transplant team after you go home. Your transplant team will help you and your caregiver learn what you need to know. The team can also help you and your loved ones work through the ups and downs as you prepare for and go through the transplant.

Many different medical tests will be done, and questions will be asked to try to find out how well you can handle the transplant process. These might include:

• HLA tissue typing (this is a blood test)
• A complete health history and physical exam
• Evaluation of your psychological and emotional strengths
• Identifying who will be your primary caregiver throughout the transplant process
• Bone marrow biopsy (this is a medical procedure that happens in the hospital or clinic)
• CT (computed tomography) scan or MRI (magnetic resonance imaging)
• Heart tests, such as an EKG (electrocardiogram) or echocardiogram
• Lung studies, such as a chest x-ray and PFTs (pulmonary function tests)
• Appointments with other members of the transplant team, such as a dentist, dietitian, or social worker
• Blood tests, such as a complete blood count, blood chemistries, and screening for viruses like hepatitis B, CMV, and HIV

You will also talk about your health insurance coverage and related costs that you might have to pay.

You may have a central venous catheter (CVC) put into a large vein in your chest. This is most often done as outpatient surgery, and usually only local anesthesia is needed (the place where the catheter goes in is made numb). Nurses will use the catheter to draw blood and give you medicines.

If you’re getting an autologous transplant, a special catheter can be placed that can also be used when your stem cells are being removed or harvested.

The CVC will stay in during your treatment and for some time afterward, usually until your transplanted stem cells have engrafted and your blood counts are on a steady climb to normal.

Transplant eligibility

Younger people, people who are in the early stages of disease, or those who have not already had a lot of treatment, often do better with transplants. Some transplant centers set age limits. Some people also may not be eligible for transplant if they have other major health problems, such as serious heart, lung, liver, or kidney disease. A mini-transplant, described under Allogeneic stem cell transplant in Types of Stem Cell Transplants for Cancer Treatment may be an option for some of these people.

Hospital admission or outpatient treatment for transplants

The hospital’s transplant team will decide if you need to be in the hospital to have your transplant, if it will be done in an outpatient center, or if you will be in the hospital just for parts of it. If you have to be in the hospital, you will probably go in the day before pre-transplant chemo or radiation treatment begins (see the next section), the transplant team makes sure you and your family understand the process and want to go forward with it.

If you will be having all or part of your transplant as an outpatient, you’ll need to be very near the transplant center during the early stages. You’ll need a family member or loved one to be a caregiver who can stay with you all the time. You and the caregiver will also need reliable transportation to and from the clinic. The transplant team will be watching you closely for complications, so expect to be at the clinic every day for a few weeks. You may still need to be in the hospital if your situation changes or if you start having complications.

To reduce the chance of infection during treatment, patients who are in the hospital are put in private rooms that have special air filters. The room may also have a protective barrier to separate it from other rooms and hallways. Some have an air pressure system that makes sure no unclean outside air gets into the room. If you’re going to be treated as an outpatient, you will get instructions on avoiding infection. Usually, people who have transplants are in a separate, special part of the hospital to keep as many germs away as possible.

The transplant experience can be overwhelming. Your transplant team will be there to help you prepare for the process physically and emotionally and to discuss your needs. Every effort will be made to answer questions so you and your family fully understand what will be happening to you as you go through transplant.

It’s important for you and your family to know what to expect, because once conditioning treatment begins (see the next section), there’s no going back – there can be serious problems if treatment is stopped at any time during transplant.

Having a transplant takes a serious commitment from you and your caregiver and family, so it is important to know exactly what to expect.

Conditioning treatment (chemo and/or radiation therapy)

Conditioning, also known as pre-transplant treatment, bone marrow preparation, or myeloablation, is usually treatment with high-dose chemo and/or radiation therapy. It’s the first step in the transplant process and typically takes a week or two. It’s done for one or more of these reasons:

• To make room in the bone marrow for the transplanted stem cells
• To suppress the patient’s immune system to lessen the chance of graft rejection
• To destroy any remaining cancer cells in the patient’s body

The conditioning treatment is different for every transplant. Your treatment will be planned based on the type of cancer you have, the type of transplant, and any chemo or radiation therapy you’ve had in the past.

If chemo is part of your treatment plan, it will be given in your central venous catheter and/or as pills. If radiation therapy is planned, it’s given to the entire body (called total body irradiation or TBI). TBI may be given in a single treatment session or in divided doses over a few days.

This phase of the transplant can be very uncomfortable because very high treatment doses are used. Chemo and radiation side effects can make you sick, and it may take you months to fully recover. A very common problem is mouth sores that will need to be treated with strong pain medicines. You may also have nausea, vomiting, be unable to eat, lose your hair, and have lung or breathing problems.

Conditioning can also cause premature menopause in women and often makes both men and women sterile (unable to have children). (See “Stem cell transplant and having children” in Stem Cell Transplant Side Effects.)

Infusion of stem cells

After the conditioning treatment, you’ll be given a couple of days to rest before getting the stem cells. They will be given through your central venous catheter, much like a blood transfusion. If the stem cells were frozen, you might get some drugs before the stem cells are given. These drugs are used to help reduce your risk of reacting to the preservatives that are used when freezing the cells.

If the stem cells were frozen, they are thawed in warm water then given right away. There may be more than 1 bag of stem cells. For allogeneic or syngeneic transplants, the donor cells may be harvested (removed) in an operating room, and then processed in the lab right away. Once they are ready, the cells are brought in and given to you – they’re not frozen. The length of time it takes to get all the stem cells depends on how much fluid the stem cells are in.

You will be awake for this process, and it doesn’t hurt. This is a big step and often has great meaning for patients and their families. Many people consider this their rebirth or chance at a second life. They may celebrate this day as they would their actual birthday.

Infusion side effects

Side effects from the infusion are rare and usually mild. The preserving agent used when freezing the stem cells causes many of the side effects. For instance, you might have a strong taste of garlic or creamed corn in your mouth. Sucking on candy or sipping flavored drinks during and after the infusion can help with the taste. Your body will also smell like this. The smell may bother those around you, but you might not even notice it. The smell, along with the taste, may last for a few days, but slowly fades away. Often having cut up oranges in the room will offset the odor. Patients who have transplants from cells that were not frozen do not have this problem because the cells are not mixed with the preserving agent.

Other side effects you might have during and right after the stem cell infusion include:

• Fever or chills
• Shortness of breath
• Hives
• Tightness in the chest
• Low blood pressure
• Coughing
• Chest pain
• Less urine output
• Feeling weak

Again, side effects are rare and usually mild. If they do happen, they are treated as needed. The stem cell infusion must always be completed.

Recovery after infusion

The recovery stage begins after the stem cell infusion. During this time, you and your family wait for the cells to engraft, or “take,” after which they start to multiply and make new blood cells. The time it takes to start seeing a steady return to normal blood counts varies depending on the patient and the transplant type, but it’s usually about 2 to 6 weeks. You’ll be in the hospital or visit the transplant center daily for a number of weeks.

During the first couple of weeks you’ll have low numbers of red and white blood cells and platelets. Right after transplant, when your counts are the lowest, you may be given antibiotics to help keep you from getting infections. You may get a combination of anti-bacterial, anti-fungal, and anti-viral drugs. These are usually given until your white blood cell count reaches a certain level. Still, you can have problems, such as infection from too few white blood cells (neutropenia), or bleeding from too few platelets (thrombocytopenia). Many patients have high fevers and need IV antibiotics to treat serious infections. Transfusions of red blood cells and platelets are often needed until the bone marrow starts working and new blood cells are being made by the infused stem cells.

Except for graft-versus-host disease, which only happens with allogeneic transplants, the side effects from autologous, allogeneic, and syngeneic stem cell transplants are much the same. Problems may include stomach, heart, lung, liver, or kidney problems. (Stem Cell Transplant Side Effects goes into the details.) You might also go through feelings of distress, anxiety, depression, joy, or anger. Adjusting emotionally after the stem cells can be hard because of the length of time you feel ill and isolated from others.

You might feel as if you are on an emotional roller coaster during this time. Support and encouragement from family, friends, and the transplant team are very important to get you through the challenges after transplant.

Discharge from the hospital after transplant

The discharge process actually begins weeks before your transplant. It starts with the transplant team teaching you and your primary (main) caregiver about:

• The precautions you’ll need to take
• Who will be your primary caregiver and what the job will be like, and who will be the back-up caregiver in case your main caregiver gets sick and can’t be near you
• How to prepare your home
• How to care for your central venous catheter
• How to take good care of your mouth and teeth
• What foods you should and shouldn’t eat
• Activities you can and can’t do
• When to call the transplant team or other health care providers

What has to happen before you can go home?

For the most part, transplant centers don’t send patients home until they meet the following criteria:

• No fever for 48 hours
• Able to take and keep down pills or other drugs for 48 hours
• Nausea, vomiting, and diarrhea are controlled with medicine
• Neutrophil count (absolute neutrophil count or ANC) is at least 500 to 1,000/mm³
• Hematocrit is at least 25% to 30%
• Platelet count is at least 15,000 to 20,000/mm³
• They have someone to help them at home and a safe and supportive home environment

(Why Are Stem Cell Transplants Used as Cancer Treatment? has more information about neutrophils, platelets, and hematocrit).

If you do not meet all of these requirements, but still don’t need the intensive care of the transplant unit, you might be moved to another oncology unit. When you do go home, you might need to stay near the transplant center for some time, depending on your condition.

Rehabilitation after stem cell transplant

The process of stem cell transplant doesn’t end when you go home. You’ll feel tired, and some people have physical or mental health problems in the rehabilitation period. You might still be taking a lot of medicines. These ongoing needs must now be managed at home, so caregiver and friend/family support is very important.

Transplant patients are followed closely during rehab. You might need daily or weekly exams along with things like blood tests, and maybe other tests, too. During early rehab, you also might need blood and platelet transfusions, antibiotics, or other treatments. At first you’ll need to see your transplant team often, maybe even every day, but you’ll progress to less frequent visits if things are going well. It can take 6 to 12 months, or even longer, for blood counts to get close to normal and your immune system to work well. During this time, your team will still be closely watching you.

Some problems might show up as much as a year or more after the stem cells were infused. They can include:

• Graft-versus-host disease (in allogeneic transplants)
• Infections
• Lung problems, such as pneumonia or inflammation that makes it hard to breathe
• Kidney, liver, or heart problems
• Low thyroid function
• Overwhelming tiredness (fatigue)
• Limited ability to exercise
• Slowed growth and development (in children)
• Cataracts
• Reproductive or sexual problems, like infertility, early menopause, pain or discomfort during sex, or loss of interest in sex
• New cancers caused by the transplant

Other problems can also come up, such as:

• Memory loss, trouble concentrating
• Emotional distress, depression, body image changes, anxiety
• Social isolation
• Changes in relationships
• Changes in how you view the meaning of life
• Feeling indebted to others
• Job and insurance concerns

Your transplant team is still there to help you, even though the transplant happened months ago. It’s important that you tell them about any problems you are having – they can help you get the support you need to manage the changes that you are going through. They can also help you know if problems are serious, or a normal part of recovery. The National Bone Marrow Transplant Link helps patients, caregivers, and families by providing information and support services before, during, and after transplant. They can be reached at 1-800-LINK-BMT (1-800-546-5268) or online at www.nbmtlink.org.